HIV and Aging Draw Big Crowd at Town Meeting

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Peter Staley at the May 9 town hall. | DONNA ACETO
Peter Staley at the May 9 town hall. | DONNA ACETO

Hundreds turned out for a town hall meeting on AIDS and aging that was convened in response to the death of a leading member of ACT UP, the AIDS Coalition to Unleash Power.

“A kind of bubble had burst,” said Peter Staley, a longtime gay rights and AIDS activist, referring to the death late last year of Spencer Cox. “What did this say about us?”

Cox, 44, a founder of the Treatment Action Group (TAG) in 1992 and the Medius Institute for Gay Men’s Health in 2005, was among those who fought hardest for anti-HIV drugs in the late 80s and early 90s.

Friends and ACT UP members questioned why Cox, who well understood the need to comply with the sometimes difficult drug regimens, had died. Some wondered if he had succumbed to the depression or risk-taking behavior that the institute had earlier studied among gay men. Online and in person, there were discussions among those who lived through the early years of the AIDS epidemic asking if Cox’s death indicated a broader trend of unresolved problems related to that earlier time.

The May 9 town hall was meant to start a conversation on that topic.

Spencer Cox's 2012 death "burst" a "bubble" among the AIDS generation

Whether the AIDS generation is confronting post-traumatic stress disorder or contending with some other ill is unknown. TAG is working with a researcher at Columbia University to assess the health and well-being of some 200 AIDS activists. Certainly, ACT UP, whose typically young members were on the front lines of AIDS, never came to terms with the deaths many saw around them.

“We had no activist way to deal with all that loss,” Jim Eigo, a longtime AIDS activist, told the crowd of roughly 600 that gathered at Mason Hall at Baruch College in Manhattan.

It could also be that the AIDS generation is showing a normal human response to the death and struggles that were a large part of the early epidemic. Or it could be that this generation is just getting older.

Activist Jim Eigo. | DONNA ACETO
Activist Jim Eigo. | DONNA ACETO

“At around the age of 45, the body begins to reveal its wear and tear,” said Dr. L. Jeannine Bookhardt-Murray, the chief medical officer at Harlem United, an AIDS service group, at the town hall. “It seems that the longer we live, the more we need to grapple with.”

In a community with many single members, the push for marriage rights notwithstanding, it could be that those individuals are entering middle age with their families of choice decimated by AIDS.

“I have friends who tell me if they don’t go out to bars, they don’t see anyone,” said Joe Jervis, who blogs at

It is true that people with HIV confront challenges in addition to the virus as they age. A long-term study on aging and HIV in a 1,000-person cohort found that more than half reported they experienced depression, with two thirds of that group reporting moderate to severe depression, according to Mark Brennan-Ing, the director for research and evaluation at the AIDS Community Research Initiative of America (ACRIA), the group that completed the study.

The study also found high levels of loneliness and stigma, but also significant resilience in this population, in particular among those study participants who were religious, Brennan-Ing said at the meeting.

In his opening remarks, Staley noted that the federal Centers for Disease Control and Prevention (CDC) recently released a study showing significant increases in suicide among older men in the US. While there have been recent suicides of some noted gay men, there is no data that show increases in suicides among gay men of any age.

“It’s too early in this process to say these are our community,” Staley said of the CDC data.

One theme that was consistent throughout the three-hour meeting was that gay groups had largely abandoned the HIV and AIDS cause.

“Gay, Inc.,” as Staley called the leading lesbian, gay, bisexual, and transgender groups, has “turned its back on us,” he said.

Several panelists also expressed concern about the rising rates of new HIV infections among young gay men, with the increases being particularly pronounced among young African-American men. The audience was overwhelmingly older and white. During the question and answer session, one young man said of those HIV infection rates, “This is a gay rights issue. This is the most important issue and yet no one is talking about it.”

Jesus Aguais, the founder and executive director of Aid for AIDS International was also a panelist. The moderator was Perry N. Halkitis, a psychology professor and the director of the Center for Health, Identity, Behavior & Prevention Studies at New York University.

Updated 5:17 pm, July 20, 2018
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Reader feedback

Harimiclir says:
I believe that there is another problem beginning to make itself felt among long-term HIV+ folk: the co-morbidity that is beginning to manifest itself in higher rates of heart disease and cancer for people who have had HIV infection and been on multiple meds now for almost 20 years. We are all walking bio-chemical experiments and it's still unclear whether gay men in their 50s are beginning to see the results of long-term infection or long-term medication or both.
May 13, 2013, 9:04 pm
Mark Elias says:
Consistent neglect is what led to the AIDS mess in the 80s. Do you remember how long it took for them to recognize us and our problems? I do. This is for a social stand point internalized homophobia from gay men and women who do not see us in them. Gay marriage is the red herring ... not an unworthy goal ... but just a red herring while you sell out and criminalize your poz brothers. The AIDS Inc. and Gay Inc. crowd are just another failed neo-conservative band, not an inclusive tribe, a band roving for selfish singular age specific fantasies.
May 13, 2013, 10:22 pm
maria hiv mejia says:
I so agree!! as a long term survivor..people that are newly infected just di not know how hard it was in every aspect
May 14, 2013, 1:01 pm
Lulujean says:
I am a straight woman who suffers from major depression and live on Social Security Disability as Spencer did. The "system" will affect anyone with depression in a very negative way. The paperwork alone sets me to crying and sends me to bed. The spenddown laws and the inability to reach a worker can be overwhelming. My paperwork has been lost four times in the last two year. I would imagine that Spencer had all of that burden and more. Sometimes it becomes too much to bear...
May 14, 2013, 3:12 pm
Kile Ozier says:
I believe that the profound well of unprocessed and unexpressed Grief that has grown and festered deep inside the Survivors is in no small part the catalyst for the bereft dysfunction materializing throughout the lives of the thousands...millions...of survivors from the trenches of the '80's; manifesting as failed relationships, unhealthy behaviors, suicides. While some seem to seek Meaning in survival or label it Survivor's Guilt; my sense is that this healed-over Wound must be Reopened and the Experience again felt in order to fully Grieve and be released...
May 16, 2013, 3:10 pm

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